Every now and then, the subject crops up on the message boards about having another child with CF. Cystic Fibrosis is hereditary, and when both parents are carriers of the gene there is a one in four chance that their child will be born with CF. For the majority of parents, they have no idea that they are carriers so the birth of a child with CF comes as a total shock. But once you have one diagnosis, you are aware of the statistical implications of your next born, which brings up the terribly hard question: should you risk having another child with CF?
When I was born, there was no method of testing the foetus for CF. Now things are quite different; there are techniques such as PGD and CVS , which can offer further options and a possiblity to ensure the child does not have CF.
I used to think it was all very clear cut. Having a child knowingly with Cystic Fibrosis was wrong, I was sure on the matter. This was predominantly due to several factors, one of which was several devastatingly sad experiences of young siblings with CF that I knew through hospital. But then I began to grow up a bit, I met several very interesting people, developed close friendships with other pwcf, some who have or have had siblings who also had CF, and who had a completely different view of it all. It began to change my opinion, help me see that perhaps this issue wasn’t as clear cut as I thought.
The one opinion I stand by quite solidly is it does annoy me when prospective parents talk about whether they can cope with two children with CF. As far as I can see, that should not be the issue. Mind you this is not unique to children with CF; this is a frustrating discussion that many prospective parents might have. Yes it is all very well deciding that you can cope with a child and that you want one, but what about the child themselves? Surely the consideration should be whether it is the best thing for them?
I no longer think there is a right answer. Cystic Fibrosis is so unpredictable, you could have a firstborn extremely well child with CF then the next one could be terribly ill. Or vice versa. As for sibling relationships, I am extremely relieved neither of my sisters have to go through what I do, but I also know people who have had life-alteringly close bonds with their siblings and been able to help each other as they both share the same illness.
There is lots more I could say on the matter but I think I will leave it there, open ended. It’s an interesting topic, and I don’t envy the parents having to discuss it and consider all the options. Yes you can have a good life with CF, but it is no walk in the park, it can kill. And there are no guarantees. Mind you there aren’t in any walk of life are there…
Update to say there is no update!
1 week ago